Corio’s braveheart

Andrew Mathieson
KRISTY and Terry Cooper’s vocabulary has vastly improved – and is certainly more complex – since the birth of their ailing daughter.
Sophie, now a feisty four and a half-year-old, has been fighting a series of rare and aggressive cancers all her life.
Doctors even found a tumour – one of many to come – before she was born.
Words like rhabdomyosarcomic, neurofibromatosis and pseudoarthrosis have become the norm in the family’s Corio household.
A mother of two, including a two-year-old boy, Kristy can now spell 17-letter, highfalutin medical terms without hesitation.
She also knows as much about her prognosis as any of the doctors, who are still baffled by Sophie’s ongoing health problems.
“At one stage we were spending that much time in Geelong Hospital they actually sent the training nurses straight into our home,” Terry grins.
“Go see the Coopers, have a chat with them and talk about Sophie’s condition”, was a common conversation between medical staff at Geelong Hospital.
Defying the odds – and the doctors’ predictions – is what Sophie does best.
Nobody thought she’d live past a few weeks.
Sophie has battled cancer several times, lives with dilated kidneys, suffered a stroke that paralysed her left hand, had a shunt applied to drain fluid from her brain and is unable to walk.
After being born with a large lump on the right side of her face, a biopsy revealed rhabdomyosarcomic cancer at just three weeks. Sophie underwent chemotherapy for the next three months.
“We were told there was no hope, that the chemo didn’t work and she was resistant to the treatment and we wouldn’t have her very long,” Kristy says.
Both of Sophie’s grandmothers moved in for her final days but months passed and she was still alive.
The first two years were just hell.
A tumour was later found to be malignant, which led to the discovery of neurofibromatosis – a genetically transmitted condition in which nerve tissue grows tumours – and further chemotherapy.
“Her geneticist has told us that it is the worse case of neurofibromatosis he’s ever seen,” Kristy remembers.
“They can’t even look back on past case studies – they’ve never had a patient like her before.”
Kristy counts at least 50 times – but probably closer to 100 – that her daughter was admitted to hospital, including about a dozen surgeries and even more anaesthetic.
Sometimes Sophie would leave Melbourne’s Peter MacCallum Cancer Institute and by the end of the day would land in Geelong Hospital because she was so sick.
Doctors were at a loss to explain her condition.
“At one stage, I didn’t call them doctors – I called them educated guessers,” Terry reckons.
Sophie’s legs were riddled with pseudoarthrosis and she has never walked.
She was born with straight legs but they have bowed over time and become strangled.
No surgeries have been able to correct her legs and doctors have told the family that bone grafts cannot help, either.
Mum has often felt little Sophie’s pain more.
“It hasn’t been like she was four and then got sick – she was sick straight away,” Kristy says.
“It has felt like I was robbed of the enjoyment of motherhood almost as soon as it began.
“As soon as she was born, I’ve had the constant worry of losing her.”
Sophie started kindergarten this year, albeit with the help of an aide, who dedicates 15 hours a week.
A special-needs pusher carries Sophie around the playground, while a purpose-built chair allows her to paint like the other kids.
A speech therapist has gradually improved Sophie’s verbal communication over the year after Terry began teaching her the sign language of key words.
Muscles inside the mouth have always affected her speech since suffering a stroke.
A national magazine this week named the Corio battler one of the Take 5 Young Bravehearts for her courage and bravery for battling major illnesses.
“I thought the title suits her very well,” a proud mum adds.